Date: Thursday, December 19th, 4:30 pm (Warsaw time)
Join live: room 74, Wydział Psychologii UW (Department of Psychology, University of Warsaw)
Join online: https://meet.google.com/kwi-rkqs-pzm
The Uhura Project – research summary and plans for the next few years
Abstract
The Uhura Project started almost 7 years ago, with the primary objective to help me and other
people who had undergone laryngectomy surgery to communicate and interact in a way that
would be satisfying for them by providing technological solutions (Zieliński, Szamburski and
Machnacz 2019) or with ways to assess interaction quality in field studies (Zieliński,
Szamburski, Biernacka-Gemel and Rączaszek-Leonardi, 2019). Since then, we talked with a
lot of people without larynx, their relatives, and healthcare providers. Sometimes within
structured scientific projects: two anthropological studies, first conducted in years 2019-2021
(see Biernacka-Gemel and Zieliński 2022 for comprehensive analyses, and master theses of
Biernacka-Gemel 2022, Zieliński 2021, and Moskała 2022 for specific results), and another
one conducted recently (see Zieliński, Biernacka-Gemel, Wojdat, Komorowska-Mach and
Rączaszek-Leonardi, 2023). Our methods included individual in-depth interviews,
participatory observation, and diary studies across two research designs. The first one was
about the lived experience of laryngectomy and everyday life post operation, and the second
one about communication situations. Overall, we interviewed 20 persons who had undergone
laryngectomy (10 men, 10 women) from various areas of Poland, with varying
socioeconomic backgrounds and status, various beliefs, family situations, professions. They
speak with various classical “voice restoration” methods such as esophageal speech,
electrolarynx and voice prosthesis, but also supplement their communication with gestures,
whisper, hitting the objects, and talking with the help of their partners, friends or relatives.
Almost all of them learnt how to deal with their new normalcy, and adapted creatively.
Moreover, our research team has also formed friendships in the studied population,
and some of these relationships are lasting, and thriving, to this day. Let us consider Ewa,
with whom I did my Master Thesis on telephone communication with voice prosthesis and
with electronic larynx; or Tony and Laura who I feel are my new foster grandparents, and
who had taught me how to use electrolarynx with intonation, and introduced me to the
practices of American Association of Laryngectomees (e.g. via swimming classes at the
conference in 2019). These interactions, along with our own life experiences (notably, the
worldwide pandemic allowed the general population to experience the communication
glitches well known to laryngectomees since years, because of remote work, or loss of smell),
contributed to our understanding of the experience of living without larynx and adapting to
new flows of breathing, eating, speaking, and interacting with others and with yourself.
Moreover, we also reflected on methodological aspects of our work that are grounded
in ecological psychology and enactive approach (Zieliński and Rączaszek-Leonardi 2024),
and that are intricately intertwined with ethical aspects of mindful relationship building
(Komorowska-Mach, Wojdat and Zieliński 2024). Along the way we analysed plenty of
bionic technologies aimed at voice restoration (Zieliński and Rączaszek-Leonardi 2022), as
well as developed our own approaches and systems (Zieliński, Hagmüller and Grzelec 2022;
Mika, Zieliński, Cyrta and Grzelec, 2024). Last but not least, we are now starting to interact
with medical and therapeutic communities to bring those solutions to practice (Zieliński,
Żodkiewicz and Ciesielska 2024; Zieliński, Wojdat, Komorowska-Mach and Żodkiewicz
2024). I do not expect you to read all of those references, but for those who are interested in
particular pieces of work, please refer to this link: https://linktr.ee/UHURAresearch.
All of this — formal and informal research activities, and experimentation with
technologies in practice — brought our attention to how complex the communication really
is, and how people dynamically adapt to the given situation, utilizing the resources in hand.
These issues were brought to light by HILL members and ecological psychologists much
earlier, but here they manifested in the particular practical aspects of the project. Based on
our reflections from the studies, we started to propose that changes experienced after larynx
resection can be seen as wise and creative adaptations, from which we can all learn, and
which we can strengthen or acknowledge while designing new technologies. We also
highlighted and strengthened assumption that the quality of life can, and should, be measured
as the quality of particular interactions, and that these can be observed and analysed, utilizing
various methods spanning from Goodwinian conversational analysis (Goodwin 2004,
Goodwin 2017) through Barker’s ecobehavioral science (Barker 1968) to lab experiments
known from human-computer interaction research. Y et, most crucially, they can be (!)
experienced (as an individual, as a dyad, or group), see especially Hane De Jaegher’s
methods of analysing particular interaction (De Jaegher, Pieper, Clénin and Fuchs, 2017), and
engaged epistemology analysing knowing and loving relations as analogy (De Jaegher 2021).
I want to focus our discussion not only on the results of our work that will be
presented briefly, but also, and predominantly, to consult our research team plans and the
future direction, as well as assistive technology development, and maybe even policies
development and public outreach; as we are more and more active in these aspects, talking
with doctors and politicians. These plans for future areas of inquiry include, among others:
i) eating in social situations, which is very much pertinent to quality of life
improvement for many people who had undergone laryngectomy or other head and neck
surgeries; dysphagia is present also in many neurological conditions, while nonnormative
food intake influence social interactions and routines; food is more complex that it may seem;
ii) atypical speech and interaction as a result of neurological disorders, such as ALS,
Parkinson Disease, stroke, or cerebral palsy; which is a more complex problem than larynx
removal only, but which can be tackled with current technologies with assistive and
augmented communication (AAC) devices having a long standing tradition already;
iii) ensuring that the technologies developed by Uhura Bionics and other
technological teams around the world are suited to provide joy, and realize other values for
their users; knowing that these values may differ profoundly from the ones we may have!
After the discussion I cordially invite you to join me in the interactions defined as
contributing to my, and our, quality of life: joint eating, singing and/or dancing, at my
apartment just across the street from the Faculty of Psychology. We can contribute to the
discussion, or just experience life together in the warm holiday atmosphere. What is a better
way of learning about social phenomena than experiencing them? It is not possible to be a
social researcher without being a social person!